Today is #BlueSunday2023 a day when we enjoy pastries, celebrate our communities, and bring hope to #millionsMissing by donating to #MyalgicEncephalomyelitis #research. This Blue Sunday I am deeply grateful to my amazing care team and all my incredible family and friends that gathered with me to celebrate this special day. Over 1 in 100 people suffers from Myalgic Encephalomyelotis aka #MECFS. 25% are housebound or bedbound with #severeME. 70% are unable to work. I lie between #severeME and #verySevereME. Completely bedbound and dependent on IV fluids and dozens of prescriction meds and injections. But still able to communicate to those I love. It is a priviledge I do not take for granted. Both my ability to communicate and having such an incredible community of friends amd family to do so with. So many people with ME are left alone. Despite being more disabling than most cancers, their disease is so stigmatized that they do not disclose or do and are ostrichized or simply told to get over it. Lack of disclosure leads to futher stigma. It is why days like #BlueSunday are so important. To create accessible spaces for #pwME to interact with others. To bring visibility to ME / #CFS and #longCovid through a lighthearted day. ME is truely an #invisibleIllness. "Mild" (50% functional reduction) patients are invisible because their illness cannot be seen on the "good days" they go out. Severe patients simply cannot be seen at all. @theslowlane.me has created a truely special event that pwME of many severities can attend. Where those who are alone can be a part of our #MECommunity. ME is a severe neuroimmunological disease with no FDA approved treatments and no cure. Go to the link in the bio of @theslowlane.me to donate to the ME charity of your choice or to @mutualaidforme to donate to this years ME Awareness mutual aid drive and help bring hope to the millions missing and #millionsMore with ME and #longCovid. To learn more about ME see my recent #MEAwarenessMonth posts. To help the ME community in materially supporting eachother follow @mutualAidForME. #ChronicIllness #ChronicallyIll #ChronicFatigueSyndrome #ChronicFatigue #NEISVoid #MyalgicE
We go blue for ME awareness month! This month is ME awareness month. Why is awareness about this disease so important? I’m gonna try to explain. ME is a highly disabling disease, but absolutely not rare! I could even say very common. 1 in the 100 people has ME. So you probably know 2 or 3 people who have ME. And everyone can get it! Worldwide there are 55 million people with ME. Then why know so little people and even doctors about it? I’m not gonna explain the whole history now, but it comes down to: science slept on it!! For decades doctors even encouraged their patients to do a harmful treatment named GET, where you have to exercise more and more. This is extremely dangerous for people with ME, because it’s PROVEN that this exacerbate their illness, in a lot of cases irreversible. They call the neglecting of ME the “biggest medical scandal of the century”. Frankly I’m not happy to have a disease with that title.. Myalgic Encephalomyelitis aka ME is a neuroimmunological disease that causes extreme exhaustion as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise (PEM). So if you are doing something (for some people as little as brushing your teeth), you can get this PEM reaction and get even sicker. Not being aware of how PEM works can have devastating consequences. Most people get ME as a immunological reaction to a virus of bacteria. Like I said: this can happen to anyone. Because of a lack of awareness, there is a lack of funding for research. There is still no cure for this disease. Most people are not recovering and are only getting sicker. And the most sick people are even in risk of dying. Because of a lack of awareness, for lots of people it takes years before they receive the correct diagnose (if they even get it, because the majority of people with ME are undiagnosed). I was “lucky” when I was 13, I got my diagnosis after 6 months. But I also got this GET treatment that made me even sicker. Text continues in comments, also #imagedescription
If ME chooses you.. You WILL experience disbelief. You WILL experience lack of appropriate testing and treatments. You WILL experience judgement. You WILL experience abandonment. You WILL experience Discrimination. You WILL become one of the #MillionsMissing. You are NOT alone. #MillionsMore #WeNeedYourHelp #advocacy #youarenotalone #CanYouSeeMeNow #MyalgicEncephalomyelitis #mecfsalonetogether #pwme #LongCovid
#humormemes #laughterisgoodforthesoul #MillionsMissing #MillionsMore #stoprestpace #FindYourRhythm #SelfCompassionIsKey #ebbandflow #KeepFaith #HoldHope #BabySteps #Chronicillneshumour Creator: Unknown -tag for credit.
Reposted with permission from @mutualaidforme. 💙 [Blue heart]. This ME Awareness Month, we are excited to announce a mutual aid drive for 5 incredible members of the Myalgic Encephalomyelitis and Long Covid communities. ⠀ We aim to raise $1500, or $300 each, to allow our fellow spoonies to pay for medical care, rent, food, and basic necessities. ⠀ ME affects over 55 million people worldwide: 70% are unable to work, and 25% are housebound or bedbound with severe ME. Only 5% recover. Yet invisible illnesses like ME rarely receive government funding for research or disability pensions. ⠀ We urge you to take action this month to materially help people with ME, starting with the people in this drive. ⠀ Follow @mutualaidforme to hear about future ways to help our community and learn more about how this illness impacts the most marginalized people in our community. Go to linktr.ee/mutualaidforme or link in our bio to donate to one or all of our featured community members. Remember to like, save, comment, and share so this reaches more people! No spoons now but interested in donating? Comment “Hi” or “Hey” and someone from our team will remind you in DM’s. Thank you for your solidarity. Comment question: (in solidarity with those who are severe and bedbound) What is your favorite hobby to do while in bed? This post features alt text. Image descriptions will be pinned in comments. Hashtags: #MutualAid #CommunityBuilding #ChronicIllnessCommunity #MECFSFundraiser #Fundraiser #MutualAidDrive #Solidarity #DualPower #MillionsMissing2024 #GlobalVoiceForME #MillionsMissing #MillionsMore #GoBlueForMECFS #AllyForME #NEISVoid #ChronicIllness #InvisibleIllness #MEAdvocacy #MEAwareness #MEAwarenessDay #MEAwarenessMonth #GlobalMEDay #spoonie #chronicFatigue #chronicFatigueSyndrome #MyalgicE #CFS #MyalgicEncephalomyelitis #MECFS #longCovid
Globetrotting in a wheelchair! *Airports. *Museums. *Shopping Malls. *Supermarkets. The first time I traveled abroad since getting sick was the first time I used a wheelchair. This was in December last year. I was so self conscious at first. Or rather, I feared meeting people I knew while in a wheelchair. I felt it was dramatic and I didn't want that kind of attention. Like somehow that made me not good enough and that people would feel sorry for me. And rule me out. There is stigma around not being fully able, and I feared that stigma. As soon as I sat down in that wheelchair at the airport I felt such a sense of relief. When you have ME/CFS most people don't know you are not in full health. Your limitations are invisible and so are your symptoms. No one treats you with special care or compassion. That is, unless you are in a wheelchair. The VIP treatment I got in a wheelchair was surprisingly comforting. We need compassion and care, we’ve suffered so much alone in isolation on the fringes of society. And when starting to go out and about again everything is still very challenging. I felt that getting that special treatment was lovely. There was warmth in it, and a sense of belonging. A sense that people who are not fully able are still full members of society. Of the world. That society expects them to be treated with respect and assisted with their needs. That they also get to travel the world and enjoy their lives. Somehow I was no longer alone in my challenges. Beside the fact how much of a difference using a wheelchair makes! It preserves precious energy to be used for something fun. And it makes most activities possible. You get to experience places and things you otherwise wouldn't be able to experience. And what's more worth than that? *Spain *Morocco *USA **The Picasso Museum in Malaga **The US Congress in Washington D.C. **The Reina Sofia Museum in Madrid There has been a certain learning curve in making good use of wheelchair services. Feel free to hit me with your questions on this if you have any, in comments or DMs. Ps. The first pic above is from that very first time. At Keflavík airport. As you see, relieved already! ☺️
@m.e_and_more #MyalgicEncephalomyelitis aka #MECFS in an incurable neuroimmunological illness from which only 5% recover. But despite having no FDA approved treatments or cures there is still plenty that #doctors can do to help. ⠀ The 2021 Clinician Coalition Treatment Guidelines 2023 Mayo Clinic Proceedings & NICE 2021 Guidelines ⠀ All provide a helpful framework for treating patients with #MyalgicE as well as the 50% of patients with #LongCovid who meet the diagnostic criteria for ME / #CFS. ⠀ It is essential that #MedicalSchool teaches doctors about this common and devastating illness which affects 1.3% of the US population, yet is undiagnosed in 90% of patients and takes on average 5 years to be disgnosed. We must #TeachME to be able to #TreatME. ⠀ Many doctors do not even bother diagnosing ME or tell patients there is no point to the diagnosis because there is no treatment. ⠀ However, the opportunity for symptom management and quality of life improval is high as is the importance of testing for and diagnosing commorbidities. Therefore, the benefit of diagnosing patients and accessing these interventions is high. ⠀ This post is not medical advice, but it is a laundry list of all the things your doctor could help you with as you try to improve your quality of life. ⠀ Every case of ME is different and many subgroups of the illness respond differently to the same potential treatments. So it is important you seek out a doctor willing to take the to get to know you and find an individualized approach to management. ⠀ Most important is that you listen to your body and advocate for your right to healthcare. ⠀ #MillionsMissing #MillionsMore #ChronicFatigueSyndrome #ChronicFatigue #NEISVoid #TeachMETreatME #MEAwareness #MEAdvocacy #MEAwarenessMonth #longHauler #fibromyalgia #POTS #MCAS #EDS #chronicIllness #invisibleIllness #chronicallyIll #spoonie #fatigue #chronicPain #MedEd
#MyalgicEncephalomyelitis aka #MECFS in an incurable neuroimmunological illness from which only 5% recover. But despite having no FDA approved treatments or cures there is still plenty that #doctors can do to help. ⠀ The 2021 Clinician Coalition Treatment Guidelines 2023 Mayo Clinic Proceedings & NICE 2021 Guidelines ⠀ All provide a helpful framework for treating patients with #MyalgicE as well as the 50% of patients with #LongCovid who meet the diagnostic criteria for ME / #CFS. ⠀ It is essential that #MedicalSchool teaches doctors about this common and devastating illness which affects 1.3% of the US population, yet is undiagnosed in 90% of patients and takes on average 5 years to be disgnosed. We must #TeachME to be able to #TreatME. ⠀ Many doctors do not even bother diagnosing ME or tell patients there is no point to the diagnosis because there is no treatment. ⠀ However, the opportunity for symptom management and quality of life improval is high as is the importance of testing for and diagnosing commorbidities. Therefore, the benefit of diagnosing patients and accessing these interventions is high. ⠀ This post is not medical advice, but it is a laundry list of all the things your doctor could help you with as you try to improve your quality of life. ⠀ Every case of ME is different and many subgroups of the illness respond differently to the same potential treatments. So it is important you seek out a doctor willing to take the to get to know you and find an individualized approach to management. ⠀ Most important is that you listen to your body and advocate for your right to healthcare. ⠀ #MillionsMissing #MillionsMore #ChronicFatigueSyndrome #ChronicFatigue #NEISVoid #TeachMETreatME #MEAwareness #MEAdvocacy #MEAwarenessMonth #longHauler #fibromyalgia #POTS #MCAS #EDS #chronicIllness #invisibleIllness #chronicallyIll #spoonie #fatigue #chronicPain #MedEd
A very early Blue Sunday 💙 (I would normally post these on the 19th, the actual day of Blue Sunday, but due to a family emergency will be off social media for the next while). To learn more about Blue Sunday and the Tea Party for M.E. please check out @theslowlane.me who has been running this wonderful fundraiser since 2013. A couple weeks ago Donnie and I had our own little tea party in our backyard. We ate some chocolate cake, drank some tea and Rio even had a Blue Sunday treat 🐾 Our little tea party donated to the @openmedf because their worldwide groundbreaking research gives us hope that one day ME will be a treatable disease. Access: the post features ALT text. #bluesunday2024 #bluesunday #teapartyforme2024 #teapartyforme #millionsmissing #millionsmore #longcovidrecovery #longhauler #covid_19 #covid #youarenotalone #openmedf #teaparty #teapartytime #myalgicencephalomyelitis #chronicfatiguesyndrome #pwme #myalgicencephalomyelitisawareness #chronicillness #chronicillnessawareness #meawarenessmonth #meawarenessweek #teatime #fundraiser #fundraising #chronicfatiguesyndromeawareness
A month ago I set myself my first fitness goal in over 8 years. I made sure it was a fun and doable goal, and vowed not to put any pressure on myself whatsoever. No negative energy was to be involved! Today I met my goal. I biked 100 km/ 62 mi in one month/ 31 days on my very best recumbent indoor bike. 100 km/ 62 mi!! How unreal is that?! I didn't focus on the speed, but just followed where I was at each day. I averaged around 12-13 km/h - 7.8 mi/h It was not difficult at all and did not lead to any negative consequences. It was first and foremost fun, and an empowering achievement. We don't mind those wherever we can get them, am I right?! This upcoming month I’m going to focus on strength training alongside some more biking. Will let you know how I do. We. Got. This. . . .
Graphic: Claire Tripp Day 14 #MEawerenessmonth #MEWishes #Ajourneythroughthefog #pwME #MyalgicE #LongCovid #LongHaulers #PACS #PSAC #MEcfs #MedEd #MillionsMissing #MillionsMore #YouAreNotAlone
It was such an honour to contribute one of the “sea spoons” I created earlier this year to the “See ME” art installation that took place in the Netherlands for May 12th, International ME/CFS Awareness Day. 🦚 Thank you @12me.be and Dascha Eliza for organizing “See ME,” and Dascha’s parents for assembling it together. This is the fourth community art installation 12ME has created to help raise awareness during ME/CFS fundraising & advocacy events. For this project 90 patients living with ME/CFS contributed a painted wooden spoon, and they were all assembled together in the shape of colourful peacock. The installation is called “See ME” because it asks the viewer to not look away from our suffering. The bright and cheerful colour palette symbolizes the zest for life we all still carry within us, but are unable to fully express due to this illness. 🥄 Spoons were chosen this year because they’re a widely recognized symbol from the “spoon theory;” a metaphor often used among chronic illness patients to help explain how our energy must be carefully rationed out every day. To learn about the project please visit: https://12me.be/gezamenlijk-kunstwerk-2024-zie-me/ #communitysupport #Communityproject #communityartproject #communityart #EndMECFS #PWME #myalgicencephalomyelitis #myalgicE #mecfswarrior #millionsmissing #CFSME #myalgicencephalomyelitisawareness #chronicillness #chronicillnesswarrior #millionsmore #chronicfatiguesyndrome #chronictatiguesyndromeawareness #artasactivism #longhaulers #spoonie #spoonieartist #livingwithme #longcovid #longcovidawareness #longhaulers
It is #MEAwareness month. Some of us may feel that we have not progressed much in the past years. Do not lose hope. I can see small but very promisings trends developing. I will not stop doing advocacy work. If a mere seed can do this, so can we. #MillionsMore #MEAction #YouAreNotAlone #MillionsMissing #MEAwareness #MEAwarenessDay #MECFS
Posted @withregram • @mutualaidforme This ME Awareness Month, we are excited to announce a M00t0al 41d drive for 5 incredible members of the Myalgic Encephalomyelitis and Long Covid communities. ⠀ We aim to raise 💲1500, or 💲300 each, to allow our fellow spoonies to pay for medical care, rent, food, and basic necessities. ⠀ ME affects over 55 million people worldwide: 70% are unable to work, and 25% are housebound or bedbound with severe ME. Only 5% recover. Yet invisible illnesses like ME rarely receive government funding for research or disability pensions. ⠀ We urge you to take action this month to materially help people with ME, starting with the people in this drive. ⠀ Follow @mutualaidforme to hear about future ways to help our community and learn more about how this illness impacts the most marginalized people in our community. Go to linktr.ee/mutualaidforme or link in our bio to donate to one or all of our featured community members. Remember to like, save, comment, and share so this reaches more people! No spoons now but interested in contributing? Comment “Hi” or “Hey” and someone from our team will remind you in DM’s. Thank you for your solidarity. Comment question: (in solidarity with those who are severe and bedbound) What is your favorite hobby to do while in bed? This post features alt text. Image descriptions will be pinned in comments. Hashtags: #MutualAid #CommunityBuilding #ChronicIllnessCommunity #MECFSFundraiser #Fundraiser #MutualAidDrive #Solidarity #DualPower #MillionsMissing2024 #GlobalVoiceForME #MillionsMissing #MillionsMore #GoBlueForMECFS #AllyForME #NEISVoid #ChronicIllness #InvisibleIllness #MEAdvocacy #MEAwareness #MEAwarenessDay #MEAwarenessMonth #GlobalMEDay #spoonie #chronicFatigue #chronicFatigueSyndrome #MyalgicE #CFS #MyalgicEncephalomyelitis #MECFS #longCovid
ME/ CFS awareness day, May 12: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating illness characterized by extreme fatigue that doesn’t improve with rest. One of its hallmark symptoms is post-exertional malaise (PEM), where even minor physical, mental, or emotional exertion can exacerbate symptoms for days, weeks, or longer. Alongside fatigue, patients often experience cognitive difficulties, muscle and joint pain, sleep disturbances, and other symptoms. Many individuals with ME/CFS are severely limited in their daily activities, often spending significant time housebound or bedridden. Life passes in front of their windows. Despite its profound impact, ME/CFS remains poorly understood, with no definitive cause or widely accepted treatment. It’s crucial to raise awareness and support research efforts to improve the lives of those affected by this condition. . Why do I post this? Because away from Instagram, I work at a clinic that treats children and adolescents with chronic pain, ME/CFS, and rheumatism. . If you would like to support, simply light up your window with blue light ➡️ an initiative by @lightupthenight4me . #mecfs #chronicfatiguesyndrome #myalgicencephalomyelitis #meawareness #cfsawareness #invisibleillness #spoonie #chronicillness #disabilityawareness #mecfswarrior #mecfsawarenessday #millionsmissing #millionsmore #postexertionalmalaise #meresearch #lightupthenight4me #copicmarkers
♡ Protest for awarenes, medical research and hope ♡ #millionsmissing #meawareness #myalgicencephalomyelitis #forgetMEnot #research #meawarenessday #millionsmore
I just want to say today on me/cfs awareness day that me/cfs is a horrific illness and has been underfunded and underreported for decades. Due to its life sucking quality it deserves to have a platform and should be talked about. As far as I can ascertain most LC patients with PEM most likely have me/cfs. Research shows us that me/cfs patients have a worse quality of life score than any other diseases and I personally can attest to that. Let’s get awareness for these illnesses and research the connections between the two. We all deserve a better life! 💙💙💙 Please take the time today and always to learn more about these illnesses there are many great resources, amongst others @goblueformecfs and @meactnet @m.e_and_more makes amazing infographics! As well as @myalgicencephalomyelitis has made some great resources. Many people with ME talk about their experiences with myalgic encephalomyelitis and our stories need to be heard. We need healthy allies to speak up for us, to put pressure on politicians to fund research, to scream from the rooftops. Because most of us are simply too ill to do so. I chose to showcase Alice Wongs @disability_visibility book today, because educating oneself about other experiences is so incredibly important and I wish I had known more about disability justice before I got ill at 18.
May 2024 Day out with family in Stratford. I am very grateful for being able to spend time outside now. In 2020 when they visited my niece saw me in bed for a few minutes and my nephew didn’t even know I was there. The family had a meal and I ate upstairs alone. 2021 when they visited I sat in the garden for about 30 minutes and then went back to bed. We sat around a table so it was less stimulating for me. 2022 visit they played cricket in the garden. I spent a whole afternoon with them (2hrs) I hit the ball but my nephew did the run. He loved it but I was so sad to be a passenger in my own life. 2023 we went on holiday together and by now my niece knows that I need a lot of rest. She is very understanding but it is so depressing that what she sees in me is a well meaning but sick aunt. For 4 years, most of her young life, I have been too unwell to engage and enjoy family life and my nephew has never know me as a healthy person. This illness has robbed me and many others of years of a normal life and currently there is very little medical support and no cure. My doctor told me early on that this was an illness of self care. Very disheartening. All I can do is try and be grateful for my steady recovery, keep optimistic and hopeful that I will one day return to my former health and advocate so that one day others won’t have to endure this. #mecfs #myalgicencephalomyelitis #missingmillions #goblueforme #goblueformecfs2024 #millionsmore #teachmetreatme #chronicillness #invisibleillness #meawarenessmonth #meawarenessday #globalmeday #longcovidawareness #longcovidawareness #spoonie
This will be a short post from me. I just want to say that me/cfs is a horrific illness and has been underfunded and underreported for decades. Due to its life sucking quality it deserves to have a platform and I will never stop talking about it. Long Covid and me/cfs are interconnected, so if you are fighting for research into long Covid, fighting for me/cfs as well should be the most natural thing to do. I’m not here to shame anyone, these illnesses are incredibly tough and first and foremost we must take care of ourselves. I know that my long Covid fits the criteria of me/cfs and the long Covid of many others do the same. As far as I can ascertain most LC patients with PEM most likely have me/cfs. Research shows us that me/cfs patients have a worse quality of life score than any other diseases and I personally can attest to that. Let’s get awareness for these illnesses and research the connections between the two. We all deserve a better life! 💙💙💙 The infographics I used where created by @goblueformecfs and @m.e_and_more More information can be found at @meactnet as well as @myalgicencephalomyelitis
My name is Sammy Lincroft and I am one of the #MillionsMissing2024 with #MyalgicEncephalomyelitis aka #MECFS. ⠀ ME took a nucular bomb to my life. I went from a world traveling musician and skilled computer scientist to being unable to even sit up and use a laptop, reliant on IV fluids and 24/7 care for every basic need. ⠀ This #GlobalMEDay I #GoBlueForMECFS as a #GlobalVoiceForME to fight for more than 50 million people worldwide with this devestating neuroimmunological illness and #millionsMore with #longCovid 50% of whom meet the criteria for ME/ #CFS. ⠀ It took me 2 years to get a diagnosis. Doctors told me that I was just depressed and that excercise would make me better. Following their advice only worsened my condition and left me #bedbound with #severeME. ⠀ It takes on average 5 years for someone to recieve a diagnosis of ME and 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ ME is one of the most neglected diseases on earth. It receives only 7% of the funding it should, only $5 per patient, less than any other illness in the NIH’s funding database. MillionsMissing have had their lives destroyed due to decades of neglect. But it is never too late to change. ⠀ ME is like quicksand. The harder you fight it the faster it will take you down. What we need are allies. Healthy people on solid ground who can throw us a rope. Who will hear our calls for help and bring us the #healthcare and #researchForMECFS we need ⠀ I haven't been outside since 2022 Haven't seen the sun ( #chronicMigraine) Breathed fresh air ( #MCAS) Stood on my own two feet ( #POTS) Gone one day without pain ( #fibromyalgia) ⠀ It is as though I live my life on a space station. Watching the Earth spin past me, connected only by my com link: new reports, text from friends and family on Earth, and of course my fellow astronauts the #MECommunity togther in #NEISVoid. Today we send out an SOS. Doctors, families, friends, head our distress call. #AllyWithME and #TeachMETreatME2024 ⠀ #MEAwareness #MedEd #ChronicFatigue #fibro #chronicFatigueSyndrome #InvisibleIllnes
My name is Sammy Lincroft and I am one of the #MillionsMissing2024 with #MyalgicEncephalomyelitis aka #MECFS. ⠀ ME took a nucular bomb to my life. I went from a world traveling musician and skilled computer scientist to being unable to even sit up and use a laptop, reliant on IV fluids and 24/7 care for every basic need. ⠀ This #GlobalMEDay I #GoBlueForMECFS as a #GlobalVoiceForME to fight for more than 50 million people worldwide with this devestating neuroimmunological illness and #millionsMore with #longCovid 50% of whom meet the criteria for ME/ #CFS. ⠀ It takes on average 5 years for someone to recieve a diagnosis of ME and 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ ME is one of the most neglected diseases on earth. It receives only 7% of the funding it should, only $5 per patient, less than any other illness in the NIH’s funding database. MillionsMissing have had their lives destroyed due to decades of neglect. But it is never too late to change. ⠀ ME is like quicksand. The harder you fight it the faster it will take you down. What we need are allies. Healthy people on solid ground who can throw us a rope. Who will hear our calls for help and bring us the #healthcare and #researchForMECFS we need ⠀ I haven't been outside since 2022 ( #SevereME) Haven't seen the sun ( #chronicMigraine) Breathed fresh air ( #MCAS) Stood on my own two feet ( #POTS) Gone one day without pain ( #fibromyalgia) ⠀ It is as though I live my life on a space station. Watching the Earth spin past me, connected only by my com link: new reports, text from friends and family on Earth, and of course my fellow astronauts the #MECommunity togther in #NEISVoid. Today we send out an SOS. Doctors, families, friends, head our distress call. #AllyWithME and #TeachMETreatME2024 ⠀ Beyond awareness take action by: Donating to @mutualaidforme's ME Awareness Month mutual aid drive Donating to research by @openmedf Sharing the Mayo Clinic Proceedings on ME with local GP clinics ⠀ #MEAwareness #MedEd #ChronicFatigue #fibro #chronicFatigueSyndrome #InvisibleIllnes
May 12th is #MEAwarenessDay! This year those of us at @mutualaidforME are working to bring attention to this devastating disease in the hopes that folks will support our community members access basic necessities and essential healthcare. ME is a complex, multi-system neuroimmunological disease effecting over 55 million people worldwide. Also known as ME/CFS or “Chronic Fatigue Syndrome,” fatigue is only one of its many unrelenting symptoms. ME is one of the most stigmatized and diseases on earth and, for that, extremely undiagnosed and underfunded. Long Covid (LC) is a post viral illness following a Covid infection, occurring in 10-30% of infections. 50% of Long Haulers end up qualifying for an ME diagnosis. The spectrum of severity within the community is vast, but no level of ME is mild; the disease itself has a quality of life score lower than many other severe conditions including renal failure, MS and lung cancer. Despite the severity of our disease, many doctors and even loved ones of #pwME disbelieve our experiences, leading many of us go without the care we need to survive. 70% of #pwME in the U.S. are unable to work. Those of us that are under-employed and unemployed, whether or not we can access disability benefits (which many of us cannot) struggle to meet our basic needs. That is why mutual aid for ME and LC is so crucial! Many Long Haulers and #pwME also experience co-occurring conditions on top of this already very debilitating disease. Our livelihoods are unpaid full time jobs! It is very expensive to survive with an illness with healthcare needs that are uninsured and low to no income. We hope you will heed our calls for support and engage in the ways listed and beyond: * Donate time to help people you know with ME & Long Covid * Support our mutual aid drive at linktr.ee/mutualaidforme * Educate the public about these illnesses and lobby your government to fund disability support and research for ME & Long Covid * Wear a mask! (less Covid cases means less LC cases) 🩵[blue heart] Alt text available. Image descriptions will be pinned in the comments. Comment question: what’s the best way to cook eggs? 🍳[egg in frying pan]
This ME Awareness Month, we are excited to announce a mutual aid drive for 5 incredible members of the Myalgic Encephalomyelitis and Long Covid communities. ⠀ We aim to raise $1500, or $300 each, to allow our fellow spoonies to pay for medical care, rent, food, and basic necessities. ⠀ ME affects over 55 million people worldwide: 70% are unable to work, and 25% are housebound or bedbound with severe ME. Only 5% recover. Yet invisible illnesses like ME rarely receive government funding for research or disability pensions. ⠀ We urge you to take action this month to materially help people with ME, starting with the people in this drive. ⠀ Follow @mutualaidforme to hear about future ways to help our community and learn more about how this illness impacts the most marginalized people in our community. Go to linktr.ee/mutualaidforme or link in our bio to donate to one or all of our featured community members. Remember to like, save, comment, and share so this reaches more people! No spoons now but interested in donating? Comment “Hi” or “Hey” and someone from our team will remind you in DM’s. Thank you for your solidarity. Comment question: (in solidarity with those who are severe and bedbound) What is your favorite hobby to do while in bed? This post features alt text. Image descriptions will be pinned in comments. Hashtags: #MutualAid #CommunityBuilding #ChronicIllnessCommunity #MECFSFundraiser #Fundraiser #MutualAidDrive #Solidarity #DualPower #MillionsMissing2024 #GlobalVoiceForME #MillionsMissing #MillionsMore #GoBlueForMECFS #AllyForME #NEISVoid #ChronicIllness #InvisibleIllness #MEAdvocacy #MEAwareness #MEAwarenessDay #MEAwarenessMonth #GlobalMEDay #spoonie #chronicFatigue #chronicFatigueSyndrome #MyalgicE #CFS #MyalgicEncephalomyelitis #MECFS #longCovid
@m.e_and_more There are over 36 documented symptoms of PEM and while dehbilitating, #fatigue is only a small piece of the picture. The name #ChronicFatigueSyndrome #CFS minimized the reality of the disease and “is like saying someone with dementia has chronic forgetfullness syndrome.” ⠀ ME is has lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. 70% of patients cannot work and 25% are housebound or bedbound with #severeME. Only 5% recover. ⠀ 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ I am a #GlobalVoiceForME for the 55 million people and 1.3% of Americans who suffer this devastating illness. It has destroyed my life and left me bedbound, dependent on 24/7 caregiving. It affects my family, finances, food choices, access to healthcare and every waking minute of my life. ⠀ #longCovid has brought attention to #postViral illness but it has also multiplied the problem with #millionsMore #longhauler patients. 6.8% of American currently report #longCovid and 17% report having had it in past or present. ⠀ On May 12th #MEAwarenessDay we #GoBlueForMECFS to bring attention to this #livingDeath, please #AllyWithME and share this post to raise awareness of this devastating illness. ⠀ While there is no FDA approved treatment or cure for ME, doctors following the NICE Guidelines or Mayo Clinic Proceedings can greatly improve their patients quality of life. Resources for doctors to provide evidence based care to ME patients are available at linktr.ee/teachmetreatme2024. ⠀ #CFIDS #NEISVoid #MedEd #millionsMissing2024 #ChronicIllness #Spoonie #InvisibleIllness #MEAwareness #covid19 #MyalgicE
#MyalgicEncephalomyelitis aka #ME (ICD-10-G93.3) is a neuroimmunological disease that causes extreme #chronicFatigue as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE). ⠀ There are over 36 documented symptoms of PEM and while dehbilitating, #fatigue is only a small piece of the picture. The name #ChronicFatigueSyndrome #CFS minimized the reality of the disease and "is like saying someone with dementia has chronic forgetfullness syndrome." ⠀ ME is has lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. 70% of patients cannot work and 25% are housebound or bedbound with #severeME. Only 5% recover. ⠀ 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ I am a #GlobalVoiceForME for the 55 million people and 1.3% of Americans who suffer this devastating illness. It has destroyed my life and left me bedbound, dependent on 24/7 caregiving. It affects my family, finances, food choices, access to healthcare and every waking minute of my life. ⠀ #longCovid has brought attention to #postViral illness but it has also multiplied the problem with #millionsMore #longhauler patients. 6.8% of American currently report #longCovid and 17% report having had it in past or present. ⠀ On May 12th #MEAwarenessDay we #GoBlueForMECFS to bring attention to this #livingDeath, please #AllyWithME and share this post to raise awareness of this devastating illness. ⠀ While there is no FDA approved treatment or cure for ME, doctors following the NICE Guidelines or Mayo Clinic Proceedings can greatly improve their patients quality of life. Resources for doctors to provide evidence based care to ME patients are available at linktr.ee/teachmetreatme2024. ⠀ #CFIDS #NEISVoid #MedEd #millionsMissing2024 #ChronicIllness #Spoonie #InvisibleIllness #MEAwareness #covid19 #MyalgicE
@roslemarchand #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
@roslemarchand #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
@roslemarchand #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
@melongcovidunitesa We would like to draw your attention to the following message: May is ME Awareness Month, and we would like to invite you to join us in increasing awareness for this condition. Cape Talk is a radio station based in Cape Town, South Africa, that operates on the frequency 567 AM and serves the Western Cape region. The station features a range of news programs that offer up-to-date news, weather, and traffic information, as well as coverage of current affairs, business, and sports. Cape Talk promotes audience participation through call-in discussions and competitions, and it also streams its live content on its website for global listening. The station is owned by Primedia. On behalf of ME and Long Covid Unite, Bettie Hough will be representing the ME and Long Covid community on the station this Saturday morning at 7:45 a.m. We are pleased to announce that Prof. Resia Pretorius, a prominent ME and Long Covid researcher, will be contributing to the program. The show will be hosted by Sara-Jayne Makwala King. Despite experiencing brain fog, Bettie will strive to deliver her message clearly and effectively. The program will have a duration of 20 minutes. I have posted some really special photos that I want to talk about. In these photos, you’ll see my good late friend Retha Viviers with both me [Bettie Hough] and with Resia Pretorius. Retha was such an amazing person, and if she were still with us, she would have done this interview herself. So, I’m doing it for her - we miss her so much. If you wish to listen to the program, please click on the following link 7.45. am on 11/05/2024 https://www.radio-south-africa.co.za/cape-talk #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
We would like to draw your attention to the following message: May is ME Awareness Month, and we would like to invite you to join us in increasing awareness for this condition. Cape Talk is a radio station based in Cape Town, South Africa, that operates on the frequency 567 AM and serves the Western Cape region. The station features a range of news programs that offer up-to-date news, weather, and traffic information, as well as coverage of current affairs, business, and sports. Cape Talk promotes audience participation through call-in discussions and competitions, and it also streams its live content on its website for global listening. The station is owned by Primedia. On behalf of ME and Long Covid Unite, Bettie Hough will be representing the ME and Long Covid community on the station this Saturday morning at 7:45 a.m. We are pleased to announce that Prof. Resia Pretorius, a prominent ME and Long Covid researcher, will be contributing to the program. The show will be hosted by Sara-Jayne Makwala King. Despite experiencing brain fog, Bettie will strive to deliver her message clearly and effectively. The program will have a duration of 20 minutes. I have posted some really special photos that I want to talk about. In these photos, you'll see my good late friend Retha Viviers with both me [Bettie Hough] and with Resia Pretorius. Retha was such an amazing person, and if she were still with us, she would have done this interview herself. So, I'm doing it for her - we miss her so much. If you wish to listen to the program, please click on the following link 7.45. am on 11/05/2024 https://www.radio-south-africa.co.za/cape-talk #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
In 2018 I caught a virus and my life was irreperably changed. The #postViral illness #MyalgicEncephalomyelitis drained me of my energy, sent me into frequent episodes of #periodicParalysis and began a 6 year spiral towards #livingDeath. ⠀ My cognitive and physical energy is now destroyed. I have 3% of the working capacity I once did. But #MECFS does not only affect me. 1.3% of Americans have ME. ⠀ ME is sometimes misleadingly called #ChronicFatigueSyndrome #CFS despite #chronicFatigue only being 1 of over 36 symptoms caused in #MyalgicE due to exertion in a process that defines the neuroimmunological illness: #PostExertionalMalaise #PEM. ⠀ #Fatigue is to ME as a match is to a nuclear bomb. ⠀ This disease is quicksand and the harder you fight the faster you sink. ⠀ But with 55 million cases of ME worldwide and over 100 million patients with the related disease #LongCovid, how can I simply sit back and watch as patients are mislead into harmful #GradedExcerciseTherapy or simply left in limbo with 90% of cases undiagnosed? ⠀ That is why I ask that this May 12th #WorldMEDay and #MEAwarenessDay you #AllyForME and support the #millionsMissing with ME and #MillionsMore with #longC. ⠀ I am a #GlobalVoiceForME because advocating for #ResearchForME and for doctors to #TeachMETreatME is my only hope. ⠀ I am #bedbound with #severeME 24/7. I require around the clock care for emptying bedpans, bringing food and water, assisting with medication and hygiene and almost every interaction I have with the physical world. ⠀ Writing the #MEAwareness content that you see here has lead to PEM induced migraines, hives, muscle spasm & weakness, and periodic paralysis and loss of speech. It has made my body feel as though acid runs through my veins and I am crushed under a tidal wave, gasping for breath. ⠀ Patients like myself are slowly killing ourselves for the desperate hope that someone will hear us and help.I urge you to be that ally. ⠀ #NEISVoid #ChronicIllness #ChronicallyIll #Spoonie
Via Ros le Marchand #millionsmissingvoice #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
Via Ros le Marchand #millionsmissingvoice #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
Via Ros le Marchand #millionsmissingvoice #DisabledLivesMatter #StopHistoryRepeatingItself #FirstME #NowLC #WeDemandAnInquiry 🎯 #StopTheHarm 🤚🏽 #EndTheStigma #StopRestPace #LearnFromME #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #MillionsMissing #MillionsMore #TogetherWeRise
I'm looking into somatic tracking. I have a feeling it's something to add to my toolbox. Can anyone recommend somatic tracking content/exercises online? To get me started 😊 Would also love to hear about your experience of somatic tracking. Happy Sunday! . .
*New level - new routine - new kind of living* Figuring out this new level continues. The latest development is that I’m now trying out staying in the city a couple of nights a week. To spend time at my University working on my PhD, going to events, meeting people and hanging out with friends and family. I’ve done it twice so far. First, I went for the conference as shared in my last post. That time around I learned I need more rest in between travel back and forth. So when I headed to the city again this week I organized it a bit differently. My main goal on departure day was just packing and driving myself to the city (1h drive). The day after was the main city day, centered around PhD work on campus plus meeting friends in the evening. The day after that my main task was to pack and drive back home. This was a much better setup. I had lots of symptoms, coming and going, and some exhaustion, but as I mentioned last week the bounce-backs are now soft and short. And what a trip. *First highlight: I met my thesis advisor in person at her office on campus for the first time since starting the studies back in 2021! It was so good meeting her and what a milestone - we had only had Zoom meetings up until this week. She offered me to work alongside her during my city stays so we spent the day together in her office. Her unconditional support and understanding from the get-go is the reason I’m able to be doing this PhD in the first place. To have such a person on one’s side is simply invaluable for lack of a stronger term. *Second highlight: At Uni I met with a very good friend of mine for lunch, who happens to also be studying for a PhD. We hadn't seen each other for two and a half years! What a treat ❤️ *Third highlight: In the evening I visited another good friend and her family, whom I hadn't seen in over four years! I ended up staying with them for over 4 hours without feeling any symptoms to speak of. It was simply that uplifting to see them again, chat and laugh. The best kind of company ❤️ So many milestones, so many friends to meet again after years and years of not being able to. What. A. Level. And so much more to come ❤️ We - Got - This
MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain
Did your #doctor know how to help you when you were diagnosed with #MyalgicEncephalomyelitis #ME/ #CFS or " #ChronicFatigueSyndrome"? ⠀ If they didn't, unfortunately, that is the norm. ⠀ Despite a 1.3% prevalence rate in the US, currently only 1/3 of medical schools teach about ME.(1) (2) ⠀ Up until the release of the Updated NICE and Mayo Clinic Proceedings within the last few years most doctors who did learn about the disease learned harmful advice. ⠀ Misinformed doctors pushed and continue to push patients into #GET and #CBT believing that they could excercise and think their way to health. Treatments that in reality caused worsened symptoms in 86% of patients. (3) ⠀ This is why this #MEAwarenessMonth @meactnet's #MillionsMissing2024 campaign on May 12th is themed #TeachMETreatME focused on getting up to date information into the hands of doctors and #medStudents. ⠀ This post is a brief overview of everything your doctor should have told you when you were diagnosed with #MyalgicE. As 50% of the #MillionsMore patients with #LongCovid meet a diagnosis of #MECFS this is important info for #longhauler patients too. (4) ⠀ So this guide covers what your doctor should have told you when you were diagnosed, in the hopes that more people will get the advice they need before it is too late. ⠀ #NEISVoid #ChronicIllness #MedEd #ChronicFatigue #Fibromyalgia #POTS #Spoonie #SpoonieCommunity #Pacing #StopRestPace #MillionsMissing #MEAwarenessDay #MEAwareness #MEAdvocacy ⠀ (1) CDC 2022 (2) ME Action 2024 (3) NICE Survey on GET/CBT 2019 (4) Leonard A Jason & Joseph A Dori 2023
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor Creator unknown. Please tag for credit
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor Creator unknown. Please tag for credit
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor Creator unknown. Please tag for credit
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor Creator unknown. Please tag for credit
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor Creator unknown. Please tag for credit
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness Creator @diaryofasickgrl
*The New Level New Devil adjustment continues.* I went to a full-day conference last week. The no. 1 conference in my field each year here in Iceland. I drove myself there (1 h drive) and spent 8 hours at the conference meeting people and following the lectures. Afterwards I headed to a small gathering and stayed there for over 4 hours! I was, in fact, one of the last people to leave the fiesta lol. A 12 hour day. I had lots of symptoms. Almost none for the first 3-4 hours. After that they came and went, and once at the afterparty they were just there but I was enjoying myself so much that I forgot about them again and again. I then spent the night at my parents’ house in the city. I expected to be able to drive back home the next day, but let's be honest - how optimistic was that?! Lol. A 12 hour day of socializing and concentrating on lectures. I needed a full day of resting at my parents’ and so I spent an additional night there. It was a comfortable resting day, the good tired one, not the grueling one. And the next day I was good to go! I drove back home (1 hour) and brought loads of groceries inside from the car and put them in their place. It was an amazing sunny day so I spent hours on our terrace sunbathing (a new capability for me) and listening to political podcasts, took a dip in our jacuzzi, biked 5 km on my indoor bike, did chores, made dinner, watched TV and went to bed at 11 pm. An average day over here these days, not. too. bad (!) This New Level New Devil is definitely an adjustment process. A learning journey. But, at last, I’m faced with an exciting adjustment process, with fun things involved, enjoyment. And soft and short bounce-backs! Amen to that. . . .
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor
#MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis #AvoidableDeaths #EnoughIsEnough #AccountabilityMatters #TogetherWeRise #LongCovid #postviralillness. #invisibleillnessawareness #fibromyalgiaawareness #chronicPain #invisibleillnessawareness #SpoonieHumor